“Beating the Odds” SLE Systemic Lupus Erythematosus
May 29, 2012, I sit in my Rheumatologist’s office for my six-‐month follow-‐up appointment. Dr. J. appears and greets me with a broad smile. “Your lab results are outstanding! Your C3 and C4 Complement Studies have returned to normal.” Over the four years of treatment these studies had remained abnormal. I have been asymptomatic for two and one-‐half years and I have been off all drug therapy for two years. I think, “Have I beat the odds?”
Throughout the course of my illness even as my symptoms went away and laboratory tests improved, he had always remained cautious and never optimistic about the chance of full recovery. I was told that I should expect periods of remission of the disease and would need medication for life. I wet my lips and ask, “So what does this mean? Does this happen very often?”
Doctor J., who usually is not very effusive replies, “You are the only patient that I have had, that has had this happen.” (He has been in practice for over 30 years). “This is remarkable! Most patients with abnormal complements are the sick ones who must take prednisone and other strong drug treatment. They are very sick. Normal complements mean there is no more evidence of an overactive immune system and along with the other tests there is no sign of attack on your kidneys.” He rechecks my joints, mobility, and lungs and says, “I can hardly remember what you were like 4 years ago when you first came to my office. Now you have no symptoms and don’t require medications. You no longer need to see Rheumatology or have follow-‐up tests unless you have new symptoms. I am writing in your record that you have a ‘history of arthritis’.” He repeats what he has said to me over and over on previous visits, ”Whatever you are doing, keep doing it”.
A serious illness is erased from my slate just like that. Everyone wonders how did I do it? My husband, a physician, says, “It was your sheer tenacity and determination.” Yes I am strong-‐minded, determined, goal oriented and not afraid to work. All of these helped, yet I know that what tipped the scales in my favor was my Tai Chi Standing (Zhan Zhuang) and a knowledgeable Tai Chi master who helped guide me.
Prior to my sudden onset of symptoms in 2008, I had always been active and healthy. I was previously an RN, who practiced for about 20 years and taught aerobics for exercise. I had changed my career, going back to Art school and became a teacher. I had been studying Tai Chi for the last 14 years. For 7 months I had been helping care for my 91year old mother-‐in-‐law, who was on palliative care. I visited her daily between work and family duties. My only time for myself was attending Tai chi class three to five times per week. I knew that it gave me energy, as well as time to focus on myself.
Thursday morning, March 21, 2008, I awoke with my shoulders and back in excruciating pain. I could not even raise my arms to put on my clothes. My primary care doctor diagnosed me with frozen shoulder and prescribed muscle relaxants, pain medication and physical therapy. Over the weekend I awoke with every joint in my body swollen and tender. I was unable to sleep at night because there was no comfortable position to give my arms relief. I gave up on the narcotic pain medication because it just made me groggy and did not really diminish the pain.
At night, I would get up and do intense standing which had been part of my daily practice and try to focus on breathing and relaxing. Only then could I drift off to sleep for a short time. As the week progressed, I could not move without pain and was exhausted. My husband and my sister, who is also a physician, were becoming alarmed. My sister was able to get me an urgent referral and lab tests for a rheumatology workup. My Tai Chi master and my Pilates therapist, who had been trying to help me release my shoulders, recommended I see Dr. L., a doctor of Oriental Medicine and Acupuncture.
My husband came with me to listen and he watched and learned which acupuncture points to press, which would help me unlock my arms. After 2 hours of tui na massage, acupuncture and release work I was able to move my arms more easily and move about with less pain. I had never before considered seeing an acupuncturist or an alternative medicine practitioner. He sent me home advising an anti‐inflammatory diet and detoxifying soaks. I felt relieved that Dr. L. would be part of my care team.
That afternoon we met Dr. J., the Rheumatologist. He informed me that several of my tests were abnormal and indicated an autoimmune disease wherein the immune system is over-‐reactive. My body was confused and attacking my joints and tissues, causing inflammation. The diagnosis at this point was probably acute severe rheumatoid arthritis but it would have to be watched and evaluated over time to see if it were chronic or if it were some other autoimmune disease. They could not determine the cause. It could have been triggered by stress. He prescribed motrin, an anti-inflammatory drug, and for me to work on decreasing stress. I was scheduled to go to Hong Kong for Tai Chi training in 2 weeks and so I was to start Prednisone therapy for a limited time to help me endure the lengthy difficult flights.
There is a saying that, “You can lead the horse to water but you cannot make them drink”. Suddenly I was thirsty, and not only ready to drink, I was actively looking for wells of knowledge from which to drink. Now I had several wells from which to quench my thirst: my Rheumatologist, my Oriental Medicine Doctor and my Tai Chi master.
The summer showed gains in some lab values but several remained abnormal. My joints remained tender and swollen. I learned new qigong from my Tai Chi master that helped me build energy and gain some relief of pain, followed the anti-inflammatory diet, did intense standing and felt that movement came easier when I was doing tai chi. My shoulders were beginning to unlock and get greater range of motion thanks to my oriental medicine doctor and I was taking herbs to help cleanse my system.
In August as I prepared for school to start up, my symptoms began to flare. My joints were on fire. I had difficulty getting up from a chair. If I sat or stood still for more than 5 or 10 minutes all my joints would lock up. I could not open jars or lift anything of any weight. I was exhausted and in a mental fog. I contacted the Rheumatologist’s nurse who said that many of their patients who were teachers faced this increase in symptoms when they returned to work in the Fall because of the stress and that they would put me on prednisone to calm the inflammation.
September lab values were more abnormal and Dr. J. suggested starting a drug called plaquenil, to suppress my symptoms. Discouraged with my progress, I sought a second opinion with a well-‐recommended Rheumatologist. Dr.K was thorough and after reviewing my lab studies and examining me, she diagnosed me with Lupus. She explained that I had a test showing positive for double-stranded DNA, an indicator for lupus. She warned me that my Complement studies were very low, which indicates the body is trying to attack a foreign substance. If no virus or foreign substance is present and the body is actually attacking its own tissues as in autoimmune disease such as lupus, it may mean it is attacking and damaging tissues such as the kidney. She felt I needed some drug therapy beginning immediately. I agreed to go on plaquenil, the most conservative drug therapy, and continued to follow with both rheumatologists.
I was well acquainted with Lupus because one of my close friends had been living with Lupus for more than 30 years. She had periods of remission followed by aggressive attacks on organs. Lupus had claimed part of a lung and resulted in her needing kidney transplants twice. Presently, she was on chemotherapy to treat a cancer caused by some of the long-‐term drug therapy used to keep her Lupus at bay. “SLE-‐Systemic Lupus Erythematosus is an auto immune disease. It affects the entire body’s connective tissues, muscles, tendons, skin, blood, organs and connective linings. It is related to rheumatoid arthritis but unlike arthritis can endanger the patient because of the way it attacks the body’s systems. Lupus is not a disease that can be cured at this time,”( LUPUS, THE FIRST YEAR An Essential Guide for the Newly Diagnosed” by Nancy C. Hanger). From this book, I learned more about some of the associated lupus syndromes I was experiencing and began to keep a daily journal with hourly entries that helped me to look at stress and fatigue in relation to activities. I became aware of what caused more fatigue and pain and what gave me more energy and decreased symptoms. Standing, qigong and tai chi always boosted my energy and eased pain. I cut back at work and took breaks thanks to my employer and colleagues who were understanding and supportive. I strictly followed the anti-‐inflammatory diet, and took supplements, herbs and enzymes prescribed by Dr. L to rid my body of toxins and support weak kidneys. I scheduled regular tui na massages and acupuncture sessions to unknot my muscles from the fibromyalgia and learned about kidney-warming qigong, sleeping qigong, sitting qigong, and shaking, opening meridian points to strengthen my kidneys. I never missed Tai Chi Class because I knew my Tai Chi master would have some new bit of wisdom for me to learn. Besides one and one-‐half hours in class, I would do two to three hours at home every day of standing and qigong. I began to really listen to my body. I finally could understand the power of breath and yi (the intention or will) and the importance of staying aware of your body all the time.
By December, I was feeling stronger with less pain and had gradually stopped the prednisone. My lab values were improving. Dr. K., my second Rheumatologist, wanted to begin a stronger medicine, methotrexate (a drug used for Cancer chemotherapy). She felt there was still high risk of attack on my kidneys. I elected to stay on the plaquenil. My regular Rheumatologist was in agreement with my choice. Two weeks later I flew to Hawaii to spend time and say goodbye to my friend with Lupus. Her body had given out even though her spirit had been so strong.
By June 2009, many of my lab values were normal and I had fewer symptoms. I began to slowly wean myself off western medications and herbs. I only needed checkups every six month now. By March 2010, I was off all medicines and herbs and asymptomatic. My doctor pronounced the Lupus was in remission. I was back to a full workout schedule and had pain only because I had worked my muscles hard. I continued to train with intensive standing and qigong while helping to care for my father who had a massive stroke in January of 2010.
Essential also to my healing was my support system of my Tai Chi “special needs” buddies who stood along side me. Together we trained hard, encouraging one another as our Tai Chi master gave us new challenges. He taught us to invest each exercise and motion with full physical and mental intent. We trained together outside of class, sharing successes and insights.
I am thankful to my Tai Chi master for the years of teaching about standing and its benefits prior to my illness. Without that background of training in breathing, standing and Tai chi forms, I would not have had the foundation from which to get my feet back under me and start down the path to recovery. His instruction and care extend beyond the classroom. Above my computer there is an e-‐mail I have printed out and it reads: “…Combine what I taught you last night into your stance, daily activity, doing form, etc. But do it intelligently. Feel the Chi in your body and do not build up any tension.
In time, every breath you take you should be able to feel your kidney warm, be full, and firm …the firmness should go into other parts of the body. Your body energy should be fuller. Let me know from time to time how you feel. The best way to really get results is workout 24/7. Do not get so high hope for any result, just do it.”
Both my Tai Chi Teacher and my Oriental Medicine Doctor offered me hope and the possibility that I could, perhaps, if I put in the time ,“beat the odds” to reach full recovery. They worked in conjunction with my Western medicine treatments and evaluations.
In the end I am thankful for Lupus in that it pushed me to drink deeper from the wisdom of zhan zhuang and Tai chi practice and taught me to better care for myself.
June 7, 2012 K.H.A.